The Luck of Donald Triplett

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

At NYT, Maggie Jones remembers Donald Triplett.  The first person to have a formal diagnosis of autism, Triplett passed away this year.  

His mother was loving and determined, and she was from a prominent family in Forest, Miss. Her father was a founder of a local bank. Beamon was a top lawyer. They had money, and they had connections. In his law office soon after Donald came home, Beamon dictated a 33-page letter about his son’s medical and psychological history, his behaviors, aptitudes and challenges, to Dr. Leo Kanner, one of the world’s leading child psychiatrists, at Johns Hopkins Hospital.

Kanner met with the Tripletts and spent two weeks observing Donald, whose history and constellation of behaviors didn’t fit anything from the textbooks or the patients he had treated. Over the next few years, Kanner saw 10 more children who were similar to Donald in their “powerful desire for aloneness and sameness,” Kanner wrote. His article on what became known as autism was published in April 1943. Donald T. was Case No. 1: the first child formally diagnosed with the disorder.

Back home, Donald’s mother had pushed the public elementary school to allow him to attend, as Caren Zucker and John Donvan detail in their book, “In a Different Key: The Story of Autism.” He eventually graduated from high school and went on to a nearby college.

That was in stark contrast to the outcomes for many others at the time. There was no federal legislation mandating that children with disabilities had the right to public education until the 1970s. It would take years longer for the public to understand, through writers like Temple Grandin, that many people with autism had particular talents and intelligences and that the disorder was not rare. In the United States today, about one in 36 children have been identified with autism spectrum disorder, according to the C.D.C.

Donald Triplett had something else going for him.  He was white.  If he had grown up as a poor black child in 1940s Mississippi, his outcome would have been grim. 

Using Religion Against Vax Mandates

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong.

From the World Health Organization

Following years of declines in measles vaccination coverage, measles cases in 2022 have increased by 18%, and deaths have increased by 43% globally (compared to 2021). This takes the estimated number of measles cases to 9 million and deaths to 136 000 – mostly among children – according to a new report from the World Health Organization (WHO) and the U.S. Centers for Disease Control and Prevention (CDC).

 Sheryl Gay Stolberg at NYT:

For more than 40 years, Mississippi had one of the strictest school vaccination requirements in the nation, and its high childhood immunization rates have been a source of pride. But in July, the state began excusing children from vaccination if their parents cited religious objections, after a federal judge sided with a “medical freedom” group.
...
Mississippi is not an isolated case. Buoyed by their success at overturning coronavirus mandates, medical and religious freedom groups are taking aim at a new target: childhood school vaccine mandates, long considered the foundation of the nation’s defense against infectious disease.

...

The legal push comes as childhood vaccine exemptions have reached a new high in the United States, according to a report released last month by the Centers for Disease Control and Prevention. Three percent of children who entered kindergarten last year received an exemption, the C.D.C. said, up from 1.6 percent in the 2011-12 school year.

...

In 2016, Ms. [May Jo] Perry met Del Bigtree, a former television producer who had partnered on a documentary with Andrew Wakefield, the British doctor behind the discredited theory that vaccines are linked to autism. Their film, “Vaxxed,” took aim at the drug industry and was a hit with Ms. Perry’s group. Mr. Bigtree later traveled to Mississippi to testify on behalf of legislation that the organization was supporting to expand vaccine exemptions.


In an interview, Mr. Bigtree said the success of the film prompted him to found the Informed Consent Action Network. The group, based in Texas and known by the acronym ICAN, says its mission is to give people “the authority over your health choices and those of your children” and to put an end to “medical coercion.” It funded the Mississippi lawsuit, and tax filings show it spends millions of dollars on legal work


Mr. Bigtree says his work is nonpartisan. But on Jan. 6, 2021, he addressed a “medical freedom” rally not far from the pro-Trump crowd that stormed the U.S. Capitol.

Bad Data on Special Ed Teacher Employment

Uncertainty is a major theme of The Politics of Autism.  Much of the uncertainty stems from the state of the science.  Some stems from bad data.

Christina A. Samuels and Alex Harwin at Education Week:

For more than four decades, the U.S. Department of Education has asked states to submit information on special education teacher employment, along with a raft of other information that the Individuals with Disabilities Education Act requires to be collected.

But the employment numbers that are submitted to the federal government are sometimes wrong—wildly so. In some cases, state data managers say the mistake is theirs. In other cases, state officials say they aren't sure where the federal government got the numbers, even though states are the ones responsible for submitting them.
...
Mississippi is another one of several states with implausible personnel numbers. Federal records show the special education teacher count at 3,770 for the 2005-06 school year. The number of teachers reported in federal records drops to 910 in the 2010-11 school year. It jumps again to 4,145 teachers in 2011-12. For 2015-16, the number of special education teachers reported in the state is 5,086.

Patrice Guilfoyle, the director of communications for the Mississippi education department, said that the state's records show that it has had around 4,000 to 5,000 special education teachers over the past decade. She could not explain the federal numbers.

Medicaid Reimbursement in Mississippi

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

In Tupelo, MS, Michaela Gibson Morris at The Daily Journal:

“We think there are 11,000 people with autism in Mississippi,” said Jim Moore, director of autism solutions at Canopy Children’s Solutions in Jackson and the chairman of the Mississippi Autism Board. “We have less than 60 providers.”

The research has shown that applied behavior analysis-based therapy can radically change the trajectory for a child with autism, Moore said. Especially if children with autism can receive intensive therapy early, they will need much less support in special education services in public schools and in social services as adults, saving the state money in the long run.

“The Centers for Disease Control and the American Medical Association not only consider it the best practice, but the gold standard,” Moore said.

The Medicaid reimbursement, which runs just over $30 an hour, doesn’t stretch to cover the costs, Moore said. States with similar demographics to Mississippi have Medicaid rates that are nearly double that level. As a result, there are currently only five autism centers accepting Mississippi Medicaid – the centers in Tupelo and West Point, Canopy in Jackson and two on the Gulf Coast.

“It’s extraordinarily hard not only to give that best treatment but keep the lights on,” Moore said.

Mississippi ranks dead last in community living standards for Americans with intellectual and developmental disabilities 

Movement on Insurance Age Caps

The Politics of Autism includes an extensive discussion of insurance 

From Autism Speaks:

On Wednesday, January 31, 2018 at 10:00am, the South Carolina Senate Banking and Insurance Subcommittee will hear the Ryan's Law expansion bill (H. 3790). The hearing will take place in Committee Room 407 in the Gressette Senate Office Building (1101 Pendleton Street, Columbia, SC 29201). Families of individuals with autism are invited to attend and join our Autism Speaks staff.

Under Ryan's Law, which passed in 2007, large group and state employee insurance plans are required to cover treatement for autism, including up to $53,000 per year of Applied Behavior Analysis, up to the age of 16. House Bill 3790 would remove the age and dollar caps, as well as make the coverage available in individual and small group insurance plans.

Please join us on Wednesday as we work toward making treatment accessible for all South Carolinians with autism!

- Lorri Unumb and the Autism Speaks Advocacy Team
lorri.unumb@autismspeaks.org

A January 16 report from AP:

Three insurance companies in Mississippi have agreed to provide more extensive coverage of services for people with autism and other developmental disorders.

State law requires coverage of applied behavior analysis therapy for children through age 8.

Insurance Commissioner Mike Chaney announced Tuesday that three insurers are removing the age cap and will provide services for people older than 8. They are BlueCross BlueShield of Mississippi, UnitedHealthcare of Mississippi and Magnolia Health.

Mississippi Medicaid Limbo

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

Bracey Harris writes about Medicaid at The Clarion-Ledger:

[A]lmost two years after Mississippi enacted a mandate requiring insurers to cover a type of autism therapy known as applied behavior analysis, providers say the state’s largest insurer of children is not reimbursing services.

Two problems:

The first is a matter of timing.

Mississippi submitted an amended state plan to the Centers for Medicare and Medicaid Services last year. The document details the scope of behavioral therapy services that will be covered for eligible beneficiaries under the age of 21 diagnosed with autism. CMS works on a 90-day turnaround schedule, meaning if the plan is approved before the end of this current quarter, the new policy will go into effect on July 1.
...
“Bottom line: We’ve got a tight window to deliver services. Every minute that passes by. It’s a grain of sand you don’t get to pull back. (I’m hopeful) this moves forward so children can start receiving services," said Jim Moore, director of the state Autism Board, which is charged with licensing board-certified behavior analysts.

The second and perhaps more pressing issue for providers is the reimbursement rates proposed by the division. In public comments, providers protested the fee schedule. Most insurers stipulate that applied behavioral analysis therapy programs must be supervised and coordinated by a licensed behavior analyst in order to receive payment.

The billing guideline proposed by Medicaid would have paid a behavioral analyst with a master’s degree $30 an hour. In neighboring Louisiana, the rate is $72 per hour.

Ranking State Services

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

On September 20, United Cerebral Palsy (UCP) issued the 2016 Case for Inclusion, an annual report and interactive website tracking state-by-state community living standards for Americans with intellectual and developmental disabilities (ID/DD). The Case for Inclusion examines data  for all 50 states and the District of Columbia, ranking each on key indicators.

The best:

1. Arizona
2. Vermont
3. New Hampshire
4. Michigan
5. Hawaii
6. California
7. District of Columbia
8. Missouri
9. South Dakota
10. Maryland

The worst:

42. Idaho
43. Wyoming
44. Oklahoma
45. Iowa
46. North Dakota
47. Illinois
48. Montana
49. Arkansas
50. Texas
51. Mississippi

Vax Requirements Prevent Measles

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

At EdSource, Jane Meredith Adams reports that Mississippi has not had a case of measles since 1992, West Virginia since 2009. Now California joins them as the third state with strict vaccination school entrance rules. 

“It’s a good club to be in,” said Rahul Gupta, state health officer in West Virginia, who was effusive in welcoming California – home to more than eight times the number of children under the age of 18 as Mississippi and West Virginia combined – as a public health leader in school vaccinations, a role that the two Southern states have played for decades. “What we are seeing in West Virginia is a significant decline in vaccine-preventable diseases,” he said. “We expect the same in California.”

“We haven’t had a measles case in a schoolchild in decades,” said Thomas Dobbs, state epidemiologist in Mississippi, which has the highest school vaccination rate in the nation for measles, mumps and rubella with 99.7 percent of students receiving the immunization.
...
West Virginia instituted its vaccination requirements in 1987, has been strengthening them ever since and has never had a religious or personal belief exemption. Mississippi set its vaccination requirements in 1972, never had a personal belief exemption and ended its religious exemption in 1979, when the state Supreme Court ruled against such exemptions.

But in the ensuing decades, the fraudulent paper on the possible link between vaccinations and autism by Andrew Wakefield, a British doctor who was stripped of his medical license by a government review board, has sowed fear in parents and wreaked havoc on vaccination rates in Europe and, to a lesser extent, in the U.S. Both Gupta and Dobbs noted that it is far easier never to have had exemptions to vaccination requirements, or to have removed them decades ago, than to remove them in 2015 as California did.

IDEA Stats: Huge Percentage Increases in Florida and Mississippi

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From Office of Special Education and Rehabilitative Services, U.S. Department of Education, 37th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2015

How have the percentages of resident populations ages 6 through 21 served under IDEA, Part B, that were reported under the category of autism changed over time? 

Exhibit 22. Percentage of the population ages 6 through 21 served under IDEA, Part B, reported under the category of autism, by year and age group: Fall 2004 through fall 2013

• In 2013, a total of 8.2 percent of students ages 6 through 21 served under IDEA, Part B, in the 52 states (“All states”) for which data were available were reported under the category of autism. More than 10 percent of the students served in Minnesota (13.8 percent), California (11.1 percent), Connecticut (11.0 percent), Oregon (11.0 percent), and Maryland (10.3 percent) were reported under the category of autism. However, less than 4 percent of the students served in Montana (3.5 percent), Puerto Rico (2.4 percent), and Iowa (1.1 percent) were reported under the category of autism. 
•  In 2008, a total of 5 percent of students ages 6 through 21 served under IDEA, Part B, in the 52 states (“All states”) for which data were available were reported under the category of autism. 127 
• The percentage of students ages 6 through 21 served under IDEA, Part B, who were reported under the category of autism was larger in 2013 than in 2008 in 50 of the 51 states for which data for both time periods were available. The sole exception was Iowa, in which 1.1 percent of the students served in both years were reported under the category of autism. 
• The percent change for 39 of the 50 states in which a larger percentage of the students ages 6 through 21 served under IDEA, Part B, were reported under the category of autism in 2013 than in 2008 exceeded 50 percent. Moreover, a percentage increase of more than 100 percent was found in Mississippi (149.3 percent) and Florida (117.3 percent).  [see pp. 125-126 of the report]

Mississippi Mandate, But Not Enough BCBAs

At the Clarion Ledger, C. Todd Sherman reports:

A state law requiring health insurance plans to cover autism therapy goes into effect in July, but it could take years before its benefits are fully realized.

Mississippi has only a few dozen people certified in applied behavior analysis, or ABA. Considered the holy grail of autism therapy, ABA can diminish or reverse symptoms associated with the disorder but costs parents as much as $200 per hour out of pocket.

A minimum 20 hours a week of ABA is recommended. But with an estimated 10,000 children in Mississippi with autism, which causes mild to severe problems in communication and socialization, those scant ABA therapists can’t meet the demand.

“We could easily quadruple our staff and not meet the demand,” said John Damon, CEO of Mississippi Children’s Home Services.
...

The University of Southern Mississippi plans this fall to offer a master’s level Applied Behavior Analysis-emphasized curriculum in the school of education and psychology, said assistant professor Jim Moore.

Moore said interest is high in ABA but limited funding may allow only a few students into the program. With autism rates on the rise — the disorder affects one in 68 children now — Mississippi needs more therapists.

Mississippi Passes Bill on Mandates and Licenses

At The Clarion Ledger, Emily Le Coz reports on passage of an insurance mandate in Mississippi:

The Legislature on Tuesday sent House Bill 885 to Republican Gov. Phil Bryant, who has supported the measure and is expected to sign it. It extends health insurance coverage to autism services, such as Applied Behavior Analysis – called ABA.

The bill restricts coverage to children ages 2-8, but ongoing treatments can continue after that age cap if deemed medically necessary.

The bill also regulates the practice of ABA therapy and requires providers obtain state licenses.

"Today is a great day for so many families who face the daily struggles and challenges of autism," said state Sen. Rita Parks, R-Corinth, who authored the Senate version of the bill. "I have no doubt that this will help these children become more independent and productive citizens of our state."

The average policy holder will see an estimated 32-cent increase as a result of the change, said state Rep. Gary Chism, R-Columbus, who brought up the measure Tuesday on the House floor, where members unanimously voted to send it to the governor.

But small business owners apparently complained the increase would unjustly affect them, prompting a Senate amendment allowing those employing less than 100 people to pass along the charges to plan participants.

"Let's get this on the books. We can always come back to this," Chrism said in response to criticism by state Rep. Steve Holland, D-Plantersville.

Mississippi Mandate Moves Forward

In Jackson, Mississippi, Emily Le Coz writes at The Clarion-Ledger:

Legislation extending autism insurance coverage to children passed the Senate floor on Thursday despite heated opposition by a handful of Tea Party conservatives.

Senate Bill 2581 won the vote by 39-6. It requires health insurance policies to offer coverage for autism treatment like Applied Behavior Analysis for children ages 2-8. It also regulates the practice of ABA therapy and requires providers obtain state licenses.

Some, though, argued the state shouldn't tell private insurers what to cover and questioned why autism should get special recognition. Led by state Sen. Chris McDaniel, R-Ellisville, opponents took turns grilling the bill's main sponsor for roughly a half hour.
They asked why the state shouldn't also mandate health insurers cover obesity, diabetes and Attention Deficit Disorder. They asked why not let the free market decide for itself what to cover. And they likened the measure to Obamacare.

"This is totally getting out of hand," said state Sen. Rita Parks, R-Corinth, who introduced the bill on the floor, after a round of such questions.

McDaniel said he cares about children with autism and agreed the state should do something, but said SB 2581 takes the wrong approach.

State Sen. Will Longwitz, R-Madison, wasn't buying it.

"I would ask you today if we're going to have an ideological battle," he said, "let's not do it at the expense of children with autism."

Mandate Movement in Mississippi and Georgia

In Jackson, Emily Le Coz reports at The Clarion-Ledger:

An autism insurance reform bill unanimously passed the full House floor Thursday and now heads to the Senate.

House Bill 885 would require health insurance policies to cover autism treatment, and specifically Applied Behavior Analysis, for Mississippi children ages 2-8.

"Every once in a while you get up here and you get a fast pitch, one that you ought to hit outta the park," said state Rep. Charles Busby, R-Pascagoula, referring to the bill.

It now heads to the Senate, which has a similar bill awaiting vote on its full floor.

Janel Davis and Kristina Torres report at the Atlanta Journal-Constitution:

With a unanimous decision, the Georgia Senate approved a bill on Thursday that would require insurance companies to provide autism treatment coverage for young children.

The 54-0 vote echoed a unanimous vote on similar legislation approved by the Senate during last year’s session.

Senate Bill 1 will likely reignite one of the most controversial issues from last year’s legislative session, when the chamber used a similar proposal as a wedge that eventually sank both it and a popular medical marijuana bill. With the state Legislature starting fresh in the first of a two-year cycle, supporters believe they have enough time to find common ground with opponents.

Mississippi Stories

In Jackson, Mississippi, Emily Le Coz reports at The Clarion-Ledger:

Mississippi Secretary of State Delbert Hosemann today released a lengthy plea of support (posted in its entirety below) for a pair of bills he helped craft that would require health insurers to cover autism services.

Hosemann, whose 3-year-old grandson was diagnosed with autism last year, urged legislators to pass Senate Bill 2581 and House Bill 885. He also included some heartbreaking testimony from parents and professionals who deal with autism every day and who support the measure.
...
Here's the entire email from Hosemann:

 Every child deserves a chance ...

10,000 children are affected by autism in Mississippi and none are covered by insurance for the most recommended treatment. Thirty-eight other states have adopted insurance coverage for autism.

Please take a moment to read statements from parents and professionals who work with this issue.

We ask you to support the Autism bill. The following are dates, times, and room numbers for committee meetings at the Capitol this week in which the Autism Insurance Bill should be brought up for a vote:

Tuesday, January 27th at 1:00 pm in Room 402 - House Insurance Committee
Wednesday, January 28th at 2:00 pm in Room 210 - Senate Insurance Committee

"After seeking a . . . BCBA, my brother at the age of about 12 began to use approximations to request preferred items as well as attempt to feed himself, urinate in the toilet, bathe himself, dress himself, etc. . . Although we were truly blessed to have such help, I began to notice that my father was never around. The reason being was...he worked. He worked all day every day in order to provide for his child with special needs. . ." --Amber Orman, BCBA, West Point, MS

"As a single mom I am still struggling with healthcare issues for my son who currently needs other treatment to assist with his condition. I am having to make hard decisions and go without needed medical services and pay for medical bills for which I did not have coverage when our health insurance was denied...We need your help."--Melinda Todd, Parent, Jackson, MS

"You can imagine the...blow when you find out that the insurance you have paid for does not cover anything for your child. Then, to find out that you basically have to move to find the only therapy program available, is in Jackson, and even then, no insurance coverage, just money up front."--Elizabeth Cobb, Parent, Madison, MS

"Time is not on the side of the children diagnosed with autism. My family moved from Georgia to Fulton, MS to help in any way that we could. The need was so great that the Autism Center of North Mississippi was born. We can barely provide services due to lack of insurance coverage. The majority of our families live below the median income level and struggle to pay for gas to come to our center, much less pay for behavior analytic therapy. This bill must pass so that the children can get the help that they need without causing a hardship on the family. Autism is hard enough!!!"--Sharon Boudreaux, BCBA, Tupelo, MS

"The lack of programs and resources for children on the Autism Spectrum in our state is underwhelming to say the least, while right here in our backyard at UMMC, Dr. Rik Lin and his team are performing groundbreaking research into the causes of ASD, How tragic if this research being conducted in our world renown facilities cannot help the families who live right here!"--Frances Rooks Patterson, Special Olympics, Madison, MS

"We were determined to help our little girl come out of her own distant world, and come into ours. Alayna has been receiving the ABA therapy now for a little over four years. . . . She continues to progress and we are amazed to see how much she has changed since she first began therapy in 2010." --Angela Tate, Parent, Pontotoc, MS

"In 2009, my brother, John, was diagnosed with autism at the age of two. He could not communicate his wants and needs with me or my family. Instead, he would bang his head, hit, bite, and scream. His aggression and self-injury was completely overwhelming...Within months of therapy, John began showing improvements. Even the smallest gain had the biggest impact on our family."--Haley Wood, BCBA, Tupelo, MS

"Children who would have never dreamed of attending college, if provided treatment early and in an intensive manner, many children will not only attend, but also graduate from college and move on to a rewarding career and life. By not providing treatment early in their lives, we stack the deck against them, and our entire state, who will (in one way or the other) be responsible for their lifelong care."--Dr. James Moore, Visiting Assistant, USM, Hattiesburg, MS

"Without early intervention, children with ASD suffer isolation, unemployment, high rates of comorbid mental illness and institutionalization, and poor school achievement. Not only would passing this legislation make an incredible impact on the lives of children with ASD in the state of Mississippi, but it would ultimately save taxpayers money. In a study conducted by Chasson, Harris, and Neely (2007), it was found that the state of Texas would save $208,500 per child with ASD across 18 years of education if early intensive behavioral interventions were implemented. Using a conservative estimate of 4500 children with ASD in the state of Mississippi, based on 2012 NACCRRA estimates of 287,047 children aged 5 to 11 in the state and recent CDC findings that 1 in 64 children has an autism spectrum disorder, Mississippi would save approximately $935,145,304.00 by mandating insurance coverage for early intensive behavioral interventions."--Dr. Keith Radley, Assistant Professor, USM, Hattiesburg, MS

An App

 Reading this otherwise positive story, a hard-bitten autism parent will hear alarm bells go off at the bolded passage below.  Thought bubble: "Are they going to use this doodad as excuse to cut services?"

Alison Prang reports at Government Executive:

An app has changed the way young people with autism and developmental disabilities in Mississippi can communicate and grow.

The app—called TalkingTiles—is being used in the Mississippi Adolescent Center, which is part of the state’s Department of Mental Health. Many of the center’s patients have autism and are nonverbal, Donna Horton, director of client services for the center, said in an interview. The app is a way for the children to communicate what they want without using words, like choosing what to eat for a snack.

They can use the app to develop a range of skillsets from math and reading to learning about colors and how to recognize signs, Horton said.

...

The app operates on Microsoft Dynamics CRM and is a Caretiles application from CoCENTRIX, a company that works to find solutions for the health and human services community.

The tiles surface as different pages in the app, said Bill Keyes, senior vice president of marketing and sales for CoCENTRIX. They could be videos, pictures or words and patients can use them to communicate.

The idea is to engage patients with apps that tie into their specific care plan and let’s them engage in their recovery process, Keyes said. It is also individually designed for different types of patients, he said, in order to cater to their needs. Keyes said it’s comparable to Windows 8, but with tiles.

Mississippi is getting ready to expand the app’s reach statewide and plans to implement it with the Department of Mental Health’s ALS and Alzheimer’s unit later this year. With ALS, Horton said, a person’s ability to speak decreases over time. With the app, there are hopes that more people could use it to help them communicate.

A patient’s progress is also tracked so that a patient’s group of caregivers can see their progress and determine the next step, Keyes said.

Another goal of the app is that states can save money on long-term residential care for patients which can be costly. Patients are also given the chance to become more independent. [emphasis added]

 

In The Autistic Brain, Temple Grandin explains:

Tablets, for example, have a tremendous advantage over plain old computers, even laptops: You don't have to take your eyes off the screen. Usually typing is a two-step process. First you look at the keyboard, then you look at the screen to see what you have typed. That could be one step two many for someone with severe cognitive problems. Before tablets, a therapist would have to mount the keyboard of a desktop computer on a box so that it was right below where the print was appearing on the screen.In tablets, however, the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much clearer  correlation. That difference could well be meaningful in terms of allowing people with extreme sensory problems to tell us what it's like to be them.

Watered-Down Legislation

In Jackson, Mississippi, the Clarion-Ledger reports:

Lawmakers on Monday approved a gutted version of a bill that would have required the State and Schools Employee Health Insurance Plan to cover autism therapies but now is reduced to a study.

It heads to Gov. Phil Bryant for a signature.

“It’s a worthless version,” said the bill’s author, state Rep. Steve Massengill, R-Hickory Flat. “I am very disappointed, but we’ll try again next year.”

House Bill 542 says the State and School Employees Health Insurance Management Board will study whether to expand its coverage for autism and file a report with the Legislature on or before Dec. 1.

The original version had required the plan to cover diagnosis and therapies for autism.
House Insurance Chairman Gary Chism had pushed for the original version of the bill, but on Monday indicated the Senate wasn’t moving and recommended the House concur.

In Kansas, the Topeka Capital-Journal reports:

A long-sought bill mandating insurance coverage for childhood autism treatment was described as a compromise Monday, but several advocates said it had been too watered-down to mollify the insurance industry.

Monday's testimony was scheduled for proponents of House Bill 2744, but several of those who testified Monday said the bill was now unacceptable due to coverage caps and provider licensing requirements.

"If you were in my position, would you vote for this bill or not?" Rep. John Doll, R-Garden City, asked Mike Wasmer, an Olathe resident and representative from Autism Speaks.

"I would not," Wasmer said.

Rep. Barbara Bollier, R-Mission Hills, asked early in the hearing where the bill came from, which she later said was an attempt to discern who had been at the table when it was devised.

"I needed a reference point when they said 'this is a compromise,' " Bollier explained after the hearing. "I needed to know what that meant and who were the compromisers."

Wasmer said the compromise was between insurance companies not eager to see an autism mandate go forward and Rep. John Rubin, R-Shawnee, who has promoted the mandate for years.

"No parent, no provider group, no parent advocacy group was at the table," Wasmer said. "This was a discussion between Rep. Rubin and the insurance lobby."

Good News, Bad News for Mississippi Autism Mandate Bill

In Jackson, Mississippi, The Clarion-Ledger reports:

A bill requiring the state and schools employee health insurance plan to cover autism therapies will pass out of the House Appropriations Committee on Tuesday, said its chairman, state Rep. Herb Frierson, R-Poplarville.

Frierson said a subcommittee passed an amended version of House Bill 542 Friday, and he will bring it up for a vote when the full committee convenes Tuesday morning.

 When asked what members might do, he said, “They’ll pass it.”

It then heads to the full House floor, which will make it the longest-surviving legislation of its kind in the eight consecutive years lawmakers have introduced autism insurance bills. Others have died in committee.

But the newly amended language places a hold on the legislation – without killing it entirely – until Frierson’s group can gather more data.

Members want information from other states that have passed similar bills. They also want input from Blue Cross & Blue Shield of Mississippi, which administers the state and schools employee health insurance plan.

Autism Speaks Lobbies Southern States

Lorri Unumb blogs at Autism Speaks:

As Charlie Daniels would say, “The South’s Gonna Do It Again.” Notwithstanding that my own home state of South Carolina was an early leader in autism insurance reform, several Southern states are still lacking insurance coverage for autism treatments. As such, the Autism Speaks Advocacy Team has hit the road down south! We’re working in Tennessee, Georgia, North Carolina, and Mississippi as well as a handful of other states scattered around the country.

Judith Ursitti is spending time in Georgia, where Governor Nathan Deal recently put $2.4 million into his budget for state employee autism insurance coverage. Hooray! Shelly Hendrix was in Jackson,Mississippi this week to witness our autism bill unanimously pass through the House Insurance committee. Another hooray!

Earlier this week (and last week), I hit the legislative building in Tennessee to negotiate with a couple dozen lobbyists who oppose our autism insurance bill. I’ll be back in Nashville next week and the next week, and I’m looking forward to meeting lots of autism families there on Tuesday, February 4th, when our bill is being heard before the House Insurance and Banking Committee. I hope all the Tennessee autism families out there will come to the hearing that day and wear red! If you haven’t yet heard from Jennifer Sheridan, the autism mom and grassroots-organizer-extraordinaire in the photo below, I bet you will soon!

As for North Carolina, there was lots of activity in the fall, and I look forward to getting back to Raleigh soon! In the fall, I attended a wonderful luncheon for the ABC of NC autism program in Winston-Salem, at which Maya Angelou was the keynote speaker.

Autism in Mississippi

The Clarion-Ledger reports:

Unlike most other children his age, 7-year-old Austin Carter can't tell his dad about his day in school.

"I don't have the luxury," said Chris Carter, 32, of Jackson. "I can't wait for that day to come."

How long that will take is unknown; Austin's language problems stem from autism.

A range of socialization and communication disabilities affecting different children in different ways, Autism Spectrum Disorders are being detected in Mississippi in ever greater numbers.

A report released July 1 refers to it as a multi-billion dollar "ticking time bomb," and the means to disarm it have been as hard to come by as words are for Austin.

"The statistics are mind-boggling," said Emily Le Coz, parent of a son with autism, and author of the report prepared by the Mississippi Autism Advisory Committee.

Appointed this year by state lawmakers to produce an annual plan to educate and train students with autism, the brain trust estimates 8,139 Mississippi children have it.

Over the past decade, that's a 368 percent spike.

Yet, the state does not require autism training for teachers to get a license, nor is it required as part of a teacher's continued professional development.

That leaves many parents desperate to find adequately trained teachers for their children, or affordable services elsewhere.

"We would try voodoo if we thought it would work," said Carter, who has joint custody of Austin with ex-wife Ruth Dixon of Brandon.

From the report:

Only early, intensive intervention has been shown to help these children improve and, in many cases, overcome the debilitating effects of autism. Yet early intervention services, which are plentiful in most states, are sorely lacking in Mississippi. This is partly due to the fact that few families here can afford the cost of these services without insurance reimbursement, and Mississippi currently doesn't require health insurers to cover early intervention. Because few families can afford it, early intervention specialists don't locate in Mississippi.

...

Without the proper intervention – either as preschoolers or within the school system – this population has little chance of gaining independence or becoming contributing members of society. Few resources exist in Mississippi to help these children transition out of school and into adulthood, and as a result, they tend to drain money from state and local coffers instead of contributing to them.

It's estimated that each person with autism, if not rehabilitated, will cost society $3.2 million over their lifetime. Most of that cost comes from adult care and lost wages.

If none of the state's 8,139 children currently living with autism overcome their challenges by the time they reach adulthood, it could cost Mississippi taxpayers more than $26 billion over the next 50 years. And that's if this population doesn't expand; mostly likely it will. If so, it will strain the Department of Education, the Department of Mental Health, the vocational rehabilitation centers and the families and communities caring for them.

Yet if we begin to address this crisis today, we have the potential to rehabilitate a generation of children and save the state billions of dollars in the end.